Why I Feel How I Feel

Yeah, yeah, I know the title is pretty much the topic of every entry, but this weekend I had a revelation. The duo Ryanhood mentioned in the previous post performed in San Diego and I was fortunate to catch the second half of their set. Afterward I had nice conversations with both Ryan and Cameron. On my walk home, I tried to understand why their manner toward me is comfortable whilst others make me want to squirm. This is not the first time I have tried to dissect another’s demeanor and behavior, but it is the first time I actually found a way to explain it that might make sense to TABs.

I believe people’s approaches can be categorized using the following areas:
1. level of pity
2. degree of amazement
3. amount of respect shown
4. how the person seems to think about my difference
5. how the person handles it when my difference becomes relevant

Pity should never be confused with empathy. In the latter, the focus is on how the individual feels about their own situation whereas the former centers around how a person emotionally responds to another’s circumstances. Pity is based on perception, thus personal beliefs and assumptions come into play. With me, often a person feels worse about my supposed plight than I do. It is exhibited in phrases like, “Your life must be so hard,” “It’s such a shame,” or simply use of the word suffering.

I think amazement comes from a similar mental process because people think about what they believe they could do if disabled like me and use that yardstick to judge my achievements. Examples include: “I can’t believe you baked that,” “I couldn’t do that if I were,” or even a lavish compliment for an every day task.

I do not possess the words to describe respect, but I know it when I see it. Think of the difference between how people treat an adult versus a five year old. There is a tacit belief that an adult can do basic grown up tasks unless evidence emerges that proves otherwise. We do not assume five year olds can cross a street alone, ride the bus without an adult, or order a meal. There are times when I am treated more like that five year old than a mature woman. Of course if I am obviously trying to do something and not managing it, it is not a matter of respect if somebody offers assistance. However, if I decline the help and they question me – “Are you really sure you can do that?” — it then boils down to respect.

The fourth item on my list can best be illustrated with cats and dogs. Does the person consider one of us a cat and the other a dog or do they consider us different breeds of the same species? In other words, is our difference or our similarity more relevant to them? People who find our difference more salient will often have difficulty finding conversational common ground with an awkward or nervous demeanor. Those who consider our similarities as more germane behave in a natural manner as they would around any other person. Obviously some people are ill-at-ease around anyone which I like to think I can discern reliably.

Finally, if my disability becomes relevant, people handle it in a variety of ways. For example, in illustrating a conversational point, some people will gesture and supply enough words to convey meaning without missing a beat. They do not stop and say, “Oh, Jen, I just did thus and so.” My difference never becomes apparent to anyone, but I am also not left feeling different because I cannot follow the conversation. On the other hand, there are people who say the word “see” around me and start apologizing. That makes my difference apparent to me and everyone else in earshot. (Actually, I use the word see along with watch and read telling people it is a matter of using common vernacular, but it is probably more about not highlighting my difference.)

I suspect you can all guess at how I like to be treated– no pity, amazement only at things amazing for any human to achieve, respect due any adult human, similarities more salient than difference, and my disability-related needs being taken into account without disruption. Cameron, Ryan, and people like them allow me to feel comfortable because they obviously do not feel uncomfortable. We are simply equals having a conversation.

I could end here, but one point needs to be made crystal clear. Not every person knows exactly what to do or say. Lack of experience is not a crime for which anyone should be judged. I suppose my list really should have a sixth item – how lack of knowing what to do is handled. Treating it in a matter-of-fact way such as asking a question the way you would ask for the potatoes to be passed is one approach. Another technique might be to give a long preamble about how you don’t know how to ask something followed by a question that avoids using the word blind by performing conversational gymnastics. The words used to ask a question are not nearly as important as whether or not my disability is treated like a taboo subject.

I have read through this multiple times and have determined I rather sound like a judgmental jerk. My promise of unflinching honesty prevents me from deleting this. However, I think the criteria are actually a very simple way to summarize a complex set of behaviors that result in me feeling one way or another. For those of you uncertain about what to say or do around a disabled person, maybe they will give you a few useful guidelines.

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About Jen

After acquiring a degree from Vassar College in psychology, I moved to Western Mass where I ran a peer mentoring network for disabled college students as well as activism and organizing around disability issues. I also conducted research on disabled women’s body image. An Upstate New York native, I eventually followed my heliotropic nature to the sun of Southern California. I divide my time between writing (disability fiction and essays) along with moderating San Diego Bisexual Forum which is one of the oldest groups of its kind in the country. In my off hours I can often be found in my neighborhood live music venue enjoying our local talent.

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